Official HIFU thread

gdudak · Contributor Joined: 08 Jun 2009 Posts: 158

Dear Members,

Use this thread for all further HIFU related discussion. Please be considerate of others' thoughts and opinions, and respectful of the forum community as a whole. A positive and comforting atmoshpere is what we strive to maintain. Any members who do not contribute to this atmosphere will not be allowed to post on the topic.

Furthermore, let it be clear that this is the ONLY thread for HIFU related discussion for now. Any new HIFU threads will either be moved to this one or will be deleted. All previous HIFU threads have been locked so members can go back and read any of the posts, but will not be able to further comment there.

The other moderators/admins and I feel this is a necessary step to restore some peace and order in the Prostate Cancer Forum. I apologize for any inconvenience. Thank you for your understanding.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 860

Speaking as myself, not as a moderator, I think:

HIFU is a great, promising treatment. I think in a few years it will be very popular in the U.S., and many men with early or intermediate risk cancer will go for HIFU instead of surgery or radiation, and for many of those men, HIFU will be successful.

(I self-edited this so that the posting was about the treatment, and not a continuation of the argument--Rep.)
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

channelsurferdude · Regular Joined: 21 Jun 2009 Posts: 12

Thanks to all the moderators and contributors on this site. It has been a hectic few days here regarding HIFU, so let me add a bit of my story.

I am a fairly new to most of this and defer to most for my information. While first researching my options regarding my treatment for prostate cancer, I came across an article by Dr. Andrew Weil. He is the founder and Program Director of the Arizona Center for Integrative Medicine (formerly the Program in Integrative Medicine), which he started in 1994 at the University of Arizona. He has become one of the leading proponents of integrative medicine. He is a best selling author and a graduate of Harvard Medical School, and one of the most widely known and respected alternative medicine gurus. He mentioned HIFU as an alternative treatment option for PCa. I trusted him and felt I should have been told about this option and all other by my doctor...didn't happen. My urologist was not real interested in discussing options other than surgery or radiation. Others were too new or not proven.

I then started my own research, which I think all guys diagnosed should do. My research also led me to Dr. Scionti that does HIFU in Mexico and Nassau.

I tried to learn as much as possible about the treatment and was glad when I found any information regarding it. As I have previously posted, I consider any information beneficial to me so that I can process it and come to my own decision. I was able to talk to Dr. Scionti and I found him to be straight forward in our discussions regarding my treatment. I would have no hesitation with him doing the treatment and even considered it for a short time. I continued to research to FIND THE BEST OPTION FOR ME.

I realize information is not knowledge, but I feel I can make a more logical decision with as much input as possible. Even from those that shout non stop about their choice of modality. I got to the point of not paying too much attention to those that are zealots...and they are in every forum with every treatment option. Granted, perhaps not quite as vocal as we experienced here, but they are still out there.

I am on many forums to gather as much information as I can...and for those of you that are considering HIFU, I urge you to go to all the other forums and do a search on HIFU. Go to a research engine and type in HIFU and read everything. There is a specific yahoo group called HIFU survivors where you can read info there too. My point is there is a lot of stuff to read so that you can decide for yourself.

For myself, I have decided on Proton Beam Therapy at Loma Linda because it is the BEST OPTION FOR ME! I start treatment next week and hope and pray to have a favorable outcome. I also pray that all that are diagnosed can find the right treatment. It might be HIFU, it might be something else. Once I had made the decision, a huge weight was lifted. Please send out positive thoughts to the Universe and pray to a higher being for me and all those that are in this battle. Thank you for this site and for your input and knowledge. You have helped more than you will ever know.

JerryB · Posted: Wed Sep 09, 2009 1:01 pm Post subject: Re: Official HIFU thread

I guess it had to happen, and I'm sure that the air will be clearer now that the decision has been taken. Thanks to the Board for getting things done.

I shall certainly hope to be posting here later on regarding progress with my HIFU treatment. As Replicant says, HIFU is no more a certain 'cure' than any other form of treatment, and the longer term oncological data has yet to be proven. However, for me, I think - hope - it's the right way forward. I don't delude myself - as apparently notme did - that it is a treatment without side-effects, some of them potentially fairly serious. However, on balance, it seems to offer reasonable hope as a potentially straightforward process for someone like me who is fortunate enough to still have prostate-confined cancer.

Watch this space!

Cheers, Jeremy

Hawk · Senior User Joined: 22 Nov 2006 Posts: 425

To the informed, every treatment option is some combination of sound research, odds, intuition, and a roll of the dice.

I hope the combination falls in place for you Jerry and that HIFU does the job. Keep us posted.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

ertweryt · New User Joined: 12 Sep 2009 Posts: 4

hi gdudak,

hope this is a useful complementarity for this post.

a clinical trial in United Kingdom showed that the use of high intensity focused ultrasound (HIFU) treatment of prostate cancer is an ideal treatment which can reduce side effects caused by surgery and radiotherapy.

High-intensity focused ultrasound treatment of prostate cancer only takes 5 hours, while the traditional method of surgery and radiotherapy treatment of prostate cancer often takes almost a month

In the 172-member clinical trials group, after the HIFU treatment 159 (92%) cured and no recurrence after one year. Only one person appeared the phenomenon of urinary incontinence, 30 ~ 40% impotence,non-intestinal problems. Traditional surgery and radiotherapy will be accompanied by 5 to 20% urinary incontinence, 50% erectile dysfunction, but also often causes pain, bleeding, diarrhea.

source from:
British Journal of Cancer (2009) 101, 19–26. doi:10.1038/sj.bjc.6605116

gdudak · Contributor Joined: 08 Jun 2009 Posts: 158

The following post is HIFU related from dabaker:

Thanks for the input about hifu Im so sorry that the thread was suspended but what do you all think if I told you my last PSA was 27 that the MRI shows a large tumor in the apex with possible bulging the the bladder neck, suspicion of extraincapsulation due to the very high psa. I dont have any symptons and Im a healthy 52 yr old. Still a good candidate for hifu ?

lauriejo · Posted: Tue Sep 29, 2009 6:11 pm Post subject: Re: Official HIFU thread

My husband was treated with HIFU on September 25 in Nassau, The Bahamas by Dr. Scionti. The treatment took approximately 4 hours and another couple hours for him to come around from the anesthesia. We were back in our hotel room by 3 pm. and out and about by 5 p.m. We went for a long walk and we really did go out to dinner that night and even slow danced outside by the marina. He wasn't 100%, but definitely not in the shape I have seen him in after other surgeries.
Dr. Scionti feels confident that he zapped all the cancer cells, but stayed clear of the nerve bundles which are so important for continence and potency. The HIFU staff was professional, caring and very competent.
The only drawbacks I can see is the fact that it cost $25000 out of pocket, and that we had to travel to Nassau for the treatment. Although, we did get a good deal on the hotel at Atlantis by booking through HIFU International. We plan on submitting the itemized bill to our Insurance company and I will keep you all posted on the outcome of reimbursement.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

lauriejo · Posted: Fri Oct 09, 2009 8:37 am Post subject: Re: Official HIFU thread

2 weeks post hifu treatment. My husband's been back at work for a week. SP Catheter comes out today. No incontinence, definite signs of life in the other area of concern. I can't say enough good things about the Dr's, nurses, staff, at International HIFU.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

problem · Regular Joined: 12 Sep 2009 Posts: 44

I've read and learned enough.

My decision is to go HIFU, it came when I took my wife in for her mamogram. The doctor showed us the photo and pointed out the area of possible cancer, or calcification, as they both show up as little diamonds, shiney dots. then she had the biopsy, and it was ultra sound guided, because the ultrasound can indeed show the cancer spots. thank God it was calcification, not cancer. But, I now acknowledge the value of the simple ultra sound machine.

Maybe it hasn't been proven to work 10 years out, but nothing has.

I just called international HIFU and am gathering up all my data for review by the doctor. I feel very relieved. It's only money afterall, and it's my future I am gambling with. And I have heard that Aetna pays, that's what I have.

BTW, thanks lauriejo for your posts, although I've found many people at other sites talking with glowing remarks about their HIFU experience as well.

Here is what I found helpful:

HIFU for prostate cancer utilizes high intensity focused ultrasound (HIFU) to ablate/destroy the tissue of the prostate. During the HIFU procedure, sound waves are used to heat the prostate tissue thus destroying the cancerous cells. Essentially, ultrasonic waves are precisely focused on specific areas of the prostate to eliminate the prostate cancer with minimal risks of effecting other tissue or organs. Temperatures at the focal point of the sound waves can exceed 100oC In lay terms, the HIFU technology is similar to using a magnifying glass to burn a piece of paper by focusing sunlight at a small precise point on the sheet. The ability to focus the ultrasonic waves leads to a relatively low occurrence of both incontinence and impotence. (0.6% and 0-20%, respectively. According to international studies, when compared to other procedures, HIFU has a high success rate with a reduced risk of side effects.

HIFU was first used in the 1940s and 1950s in efforts to destroy tumors in the central nervous system. Since then, HIFU has been shown to be effective at destroying malignant tissue in the brain & prostate. Today, the HIFU procedure for prostate cancer is perfomed using a transrectal probe. This procedure has been performed for over ten years and is currently approved for use in Japan, Europe, Canada, and parts of Central and South America.

It is completely non-invasive, except you do need a supra pubic catheter installed for 2 to 3 weeks.

JerryB · Posted: Fri Oct 09, 2009 11:50 am Post subject: Re: Official HIFU thread

Hi lauriejo

Great news to hear that everything is going well for your husband post-HIFU.

Three weeks from today I shall be having the same procedure. Are you able to provide further information on how things have been for your husband during the past two weeks?

1) Was the suprapubic catheter uncomfortable? Was it and the associated pipework etc reasonably easy to manage?

2) The fact that your husband was able to have his catheter removed after two weeks indicates that urinating normally was possible fairly quickly after the procedure. How soon afterwards was this possible? Were there occasions when it was necessary for him to use the suprapubic catheter because he was unable to pee normally?

3) I experience reduced flow and frequency because of BPH. I've been told that this should improve after the HIFU treatment. It's possibly too early to know yet, but has your husband's flow changed/improved post-HIFU?

4) I assume that your husband had total gland ablation? Bearing that in mind, it's very encouraging to hear about the 'signs of life' so soon after HIFU treatment.

Please keep us posted on how things are going.

Cheers,

Jeremy
_________________
Age - 67
PSA – 7.8 ug/L. in February 2009.
Gleason – 7 (4+3). T stage – 2b. Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate.
September 2009 - decided on HIFU. Scheduled for 30th October 2009.

lauriejo · Posted: Fri Oct 09, 2009 12:10 pm Post subject: Re: Official HIFU thread

problem, I am so glad I could help. I am so excited about HIFU treatment. I want to save every guy with early detected prostate cancer from the side effects of surgery and radiation. My husband and I are so thankful to HIFU International. They saved our lives. Good luck and God bless.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

lauriejo · Posted: Fri Oct 09, 2009 12:35 pm Post subject: Re: Official HIFU thread

Jerry, My husband didn't find the catheter too uncomfortable. I think he was just tired of it after 2 weeks. He figured out all the gear pretty quickly. I think he tried to urinate 5 or 6 days after the procedure and it worked. Then it got better and better everyday. The last few days he hasn't even bothered with the bag. He kept the catheter shut off.
I don't know about the flow, but I can tell you that It sounds pretty strong from the other side of the bathroom door.
The signs of life were without Cialis etc., although he was reading a scene from one of my steamy romance novels at the time.
Yes to the total gland ablation.
Good luck and God Bless. I'll be thinking about you.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

lauriejo · Posted: Sun Oct 18, 2009 6:41 pm Post subject: Re: Official HIFU thread

3 weeks post HIFU and my husband is good as new, he says even better than before. No incontinence, no ED. Truly amazing. I thank God every day that we found International HIFU and Dr. Scionti. Dr. Scionti is a doctor that not only cares about curing the cancer he cares about the person. When I first saw the HIFU pop up online I thought it too good to be true, but now I know it was a Godsend. I know I sound like a commercial, but I want every man with early stage prostate cancer to know about this procedure and make an informed decision before undergoing something as drastic as surgery or radiation. It breaks my heart to read the stories of unhappiness caused by the side effects that could have been avoided if the man was just told about the alternative prostate cancer treatment of HIFU. Feel free to private message me for more information. I am not a sales rep, just a very happy wife because we wives know that if our husband's are happy then we are too.
_________________
55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09, PSA .1 @ 3 mos post hifu

glp · New User Joined: 25 Oct 2009 Posts: 3 Location: Arizona

[quote="lauriejo"]My husband was treated with HIFU on September 25 in Nassau, The Bahamas by Dr. Scionti. The treatment took approximately 4 hours and another couple hours for him to come around from the anesthesia. We were back in our hotel room by 3 pm. and out and about by 5 p.m. We went for a long walk and we really did go out to dinner that night and even slow danced outside by the marina. He wasn't 100%, but definitely not in the shape I have seen him in after other surgeries.
Dr. Scionti feels confident that he zapped all the cancer cells, but stayed clear of the nerve bundles which are so important for continence and potency. The HIFU staff was professional, caring and very competent.
The only drawbacks I can see is the fact that it cost $25000 out of pocket, and that we had to travel to Nassau for the treatment. Although, we did get a good deal on the hotel at Atlantis by booking through HIFU International. We plan on submitting the itemized bill to our Insurance company and I will keep you all posted on the outcome of reimbursement.

My first post on this site and not sure where it is suppose to fit in???
We are so happy to have found out from these site about HIFU, thanks to all of you. We are considering Nassau with Dr Scionti also. Did you find out about any insurance reinbursement yet. We are with United Healthcare and our plan doesn't cover anyting but emergencies out of the counrtry? I read to turn it in afterwards, any decision from them yet?

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